Daylady - starting all over


Hi Ladies.  I am a bit discouraged.   Got the results of a PET Scan back yesterday, that was done folowing a CT scan that showed a small nodule on my liver.  We were hoping we could just surgically remove it.  The PET scan came back showing lesions on the pelvic wall, down the left side of the mediastinum (thorasic cavity) and in paraortic and aortocaval nodes that lit up.  The nodes apparently lit up (SUV readings from 3 - 23), but none are enlarged They weren't even noted on the CT scan!!  And there was only a week between scans.  Surgery is off the table due to the number of locations.  My oncologist wants me to start Topotecan.  Have a choice of 5 days a week every 21 days (1 week of chemo daily, followed by 2 weeks off) or once a week for three weeks followed by one week off.  I am basically asymptomatic and feel good, but discouraged.  Anyone had experience with either of these two Topotecan dosing schedules?  Side effects?  Hope all is well with all of you. - Helen  


  • Lou Ann M
    Lou Ann M Member Posts: 996 Member

    I was on Topotecan for a while  with very poor results.  I was on the 5 day then two weeks off plan. The side effects were not to bad but it did bother my appitite a lot.  Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Oh Helen, so sorry to hear

    Oh Helen, so sorry to hear this! I don't have any experience Topotecan. But I did want to send you support.

    Take care of yourself and I hope this works for you.

    Love and Hugs,


  • brissance
    brissance Member Posts: 192
    edited August 2016 #4

    Dear Lady tough tough news.  You are something special.  You are so positive and firm and that is exactly what will beat that evil doer, cancer.  Just another dragon to slay.  You know you have my support, prayers, love and hugs.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
    Helen, I am sorry to hear

    Helen, I am sorry to hear your news.  However,  I do hear in your note your optimism and courage.  Please know my prayers are for your strength and success.  Hugs (dear) day lady.

  • BC Brady
    BC Brady Member Posts: 70

    Dearest Helen - I feel your pain. Been thru one reoccurrence and now fighting in the lymph nodes. KNOW THIS AND BELIEVE IT: You are going to beat this back again! Maybe after the chemo shrinks the areas surgery will be an option? Maybe there will be an immunotherapy that will work for you? Ask your doctor about further genetic testing and find out what markers you have and what trials there are going on. I am awaiting genetic test results for specific markers for keytruda - or another targeted therapy. If I don't have the markers, the next step is topotecan for me as well. The only dosing option given for me was once a week for 3 weeks then off for one. Keep asking and keep fighting!

    Waiting for good news for you,